After undergoing serious surgery or suffering from a life threatening illness, it is quite normal for you to be looked after by your loved ones when returning home. They may be informal caregivers or formally listed by the Government as your primary caregiver.
In my case, it was some months after returning home when a Government department wanted to ask me some questions and required me to complete a form. My husband took over the phone call as I still got somewhat confused about all the things I had to do and could not complete the form as I could not read.
When my husband told them this, he was asked “Are you receiving assistance from the Government as the primary caregiver?” When he responded “No” he was advised to register as my primary caregiver and he would receive a small stipend that would assist us a little.
Unfortunately two years after my stroke and brain tumor surgery, I was still unable to read or complete forms and still got confused with managing different activities and discussions. However, at this time, my husband had to have a full knee replacement and was confined to a wheelchair for nine months as he was placed on a waiting list for surgery.
As I could not shop on my own (I could not read the labels on food containers and could not work out the money) I now had the added burden of having to get a wheelchair in and out of the car as well as the shopping. It certainly tired me and when I got home I had to rest before I could unpack the groceries.
Then, when he came home from hospital and was unable to walk on his crutches without severe pain and had to go to physiotherapy and hydrotherapy, I became his primary caregiver.
It was a strange situation to be in. We figured that one of us had to be fit enough to help the other and in case we both became incapacitated at the same time, we arranged to have ourselves assessed as suitable for respite care if we needed it. This meant that in an emergency, we could be placed in a home until one of us was in a position to look after the other and the home.
In my book ‘Thank God I Had a Stroke’, you can read more about just how important my primary caregiver was in speeding up my brain tumor and stroke recovery. I think caregivers are not given enough credit and support for the wonderful work they do to assist the seriously ill recover.
Hints and Tips
Don’t wait until you really need help when you are coping with illness. The length of time it takes for Government wheels to turn may mean that when you need help it may not be forthcoming immediately. Better to get yourself assessed and prepared for emergency assistance when you are initially aware that your health (or the health of your caregiver) can deteriorate at any time.